distress Emotional functioning
Conditions
Interventions
Sponsors
Eligibility
Inclusion criteria
Inclusion criteria: The research population consists of informal caregivers and the ALS and PMA patients they provide care for. In order to be eligible to participate in this study, caregiver-patient dyads must meet all of the following criteria: * The caregiver is the partner of the ALS or PMA patient * The informal caregiver is 18 years or older * The informal caregiver and the patient have access to the Internet * The patient gives the caregiver permission to answer questions which are related to the patient and the disease of the patient. * The caregiver and the patient are able to complete Dutch questionnaires;When patients indicate they do not want to participate in the study, caregivers are allowed to participate without the patient. The inclusion criteria remain in force.
Exclusion criteria
Exclusion criteria: * The caregiver participates in the ALS-CarE study
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The main study outcome is the emotional functioning of the caregiver assessed with the Hospital Anxiety and Depression Scale. | — |
Secondary
| Measure | Time frame |
|---|---|
| Secondary outcomes are the caregiver burden, caregiver quality of life, quality of life of the patient and emotional functioning of the patient | — |
Countries
Netherlands